As a Black mother diagnosed with Crohn’s disease, I’ve come to understand that irritable bowel disease affects an estimated 3 million Americans, with approximately 780,000 having Crohn’s disease. It is uncertain and certainly underreported how many of them resemble me, highlighting the need for more awareness and understanding.
I was diagnosed with an autoimmune condition I had never heard of in 2013. Specifically, because Crohn’s Disease has historically affected people of Jewish descent. I’m Black.
In the spring of that year, life began to return to normal. Or as normal as can be expected with a newborn. My return to work after maternity leave was recent. I was returning home from work when I felt a strong, incapacitating pain in my abdomen for the first time. I had just arrived home after picking up my 2-month-old kid from daycare.
As soon as I put the car into park, I found myself stooped over and writhing in agony as tears began to fall. I remained there for what seemed like an eternity, clutching my abdomen, muttering curses, and pleading for the pain to cease.
But the suffering continued. I was unable to walk, stand, or hold my newborn daughter. I normally take pleasure in my independence, but common sense prevailed, and I recognized I needed assistance. I summoned the courage to phone my husband and request that he return home early. He was able to guide our infant daughter and me inside the house upon our return home.
Experiencing the Unknown
Three hours later, my husband drove through rain and hail while sirens blared and red and blue lights flashed by. The roads were flooded, panic ensued, and mayhem appeared at precisely the wrong time. I arrived at the emergency room in Dallas, Texas, where we were residing at the time, during a tornado.
The emergency room does not allow infants, so my husband had to wait outside with our daughter. In the midst of desperate prayers, I was alone, in pain, and wondering if a tornado coming to grab me would have been the worst thing at that point.
My white blood cell count was sky-high, and my temperature continued rising. A barrage of tests was requested, necessitating multiple vials of blood, a great deal of prodding and prodding, and more tears. I was alone in a chilly emergency hospital examination room, but it was silent.
I could still faintly hear the muted sounds of tornado sirens and rain pounding on the hospital’s roof. A nurse entered the room, knocked on the door, and handed me a breast pump. It took me hours to discover that I hadn’t fed my daughter since I was so preoccupied with abdominal pain.
I sat there by myself, weeping and pumping. Mostly because I felt lonely and terrified, but also because breast milk is like liquid gold for a new mother. I could not believe I was required to flush this away. It made my misery and frustration worse. With all the antibiotics and medicines coursing through my IV, breastfeeding was instantly ruled out moving forward.
My husband and kid were required to return home while I was confined to a hospital room for several days. Even with my own breast milk, our 2-month-old would barely take a bottle at the time. She wanted a genuine article. I have no idea how my husband managed to bottle-train her in 24 hours, but he is a true hero.
The physicians first diagnosed me with appendicitis and prepared me for surgery. Given the severity of my abdominal pain, it seemed the most plausible explanation for my symptoms. A surgeon entered my room, informed me of what to expect, and then abruptly exited.
I’m certain I nodded or responded in some way. But it was as if I had an out-of-body experience when I observed myself lying in the hospital bed as the surgeon said a string of words that resembled Charlie Brown’s teacher: “wah wah wah wah wah.”
A New but Uncommon Diagnosis
Before the operating room was prepared, a specialist examined my x-rays and ruled out the appendectomy; therefore, the operation was canceled. I felt a mix of feelings, from relief to fury. At this point, I was mostly astonished by the paucity of responses. Nearing midnight, this saga had already lasted over nine hours. A conveyor belt of specialists observed me and pondered what may be wrong with me. They convened and agreed to test me for (I’m not making this up) bubonic plague and anthrax poisoning.
Perhaps it goes without saying, but wondering if you’re about to die is an emotionally and mentally draining experience. Especially when you’re questioning how it’s conceivable that you’ve become a victim of biological warfare. More than a few specialists later, and after a specific frustration-induced tantrum in which I demanded to be removed from my IV, we had some answers.
The gastroenterologist entered my room. He said, “I believe I understand the situation, and we’re going to fix you up. Not to worry! “. He smiled, patted the end of my bed, and left as swiftly as he had arrived. I was rather relieved. At least it appeared that I would finally receive some answers, and at least I wasn’t infected with the virus. I also had a million questions.
That evening, he diagnosed me with Crohn’s disease. I would subsequently discover that the diagnosis of Crohn’s disease is quite complex. Although his symptoms and lab results pointed to his diagnosis, additional testing was necessary because, being Black and all, I did not match the conventional patient profile. It was established that the onset was likely due to the tremendous influx and subsequent waning of pregnancy hormones, along with the lasting physical trauma of an emergency c-section that had ravaged my body just weeks before.
My sickness continues to test my patience, and occasionally, much to my dismay, my body betrays me. Yet I am really fortunate to have been able to control my sickness throughout the years. Overall, I am alive and able to adore my family. If you are as unfamiliar with Crohn’s disease as I was, you should know that it belongs to a group of digestive ailments that are frequently grouped under the heading of Inflammatory Bowel Disease (IBD). It is a sickness with no known treatment. According to the Crohn’s and Colitis Foundation, it is “a chronic inflammatory gastrointestinal illness.”
Crohn’s Disease and Minority Groups
There are an estimated 3 million people affected by IBD, with around 780,000 with Crohn’s disease. It is unknown and certainly underreported how many of them resemble me. My aim is that by sharing our experiences, Black individuals with Crohn’s disease may demystify what may be occurring to others and open the floodgates for community among us. Because of decades-old beliefs about IBD only affecting white people and institutional racism that has led to a lack of access to healthcare and misdiagnosis for many Black Americans, very little is understood about the long-term and daily effects of Crohn’s disease on African Americans.
We do know that Black children with Crohn’s disease suffer more frequently than their peers—a striking example of health disparities. As Crohn’s disease is inherited, there is a chance that my daughter will be one of those Black children in the future. I cringe at the concept and am eager to increase Black community awareness so that we can provide the finest educated care for our children.
I found it difficult in 2013 and continue to find it difficult today to locate someone with my appearance and similar access to health care, socioeconomic background, cultural background, etc. Let alone locating a gastroenterologist who looks like me AND is familiar with my condition. It has been a lonely journey navigating a sickness that none of my Black relatives or acquaintances have heard of or considered. We have learned over the years that many historically marginalized populations are affected by Crohn’s disease. I am one of these individuals, as a Black mother and woman. The National Institutes of Health is currently financing a study that will investigate the effects of Crohn’s disease on African American individuals like myself.
When I began researching my newly diagnosed ailment and attending patient conferences, extra-intestinal symptoms were a popular topic of debate. Extraintestinal manifestations include symptoms affecting the skin, eyes, esophagus, and other organs outside of the intestine. There were, however those who denied the premise.
I was met with resistance in a number of exam rooms when I described symptoms outside of my digestive tract. My vision was hazy, my eyes were enlarged, and my skin did things I did not know it was capable of. My hair’s texture and density were altering, and I was consistently listless. I knew in my bones that it was Crohn’s disease.
Obtaining an agreement from a healthcare provider was nearly impossible. Sitting on an exam table in front of a healthcare practitioner who refuses to believe you know your body is all too typical, as many Black patients will attest. Hence, I suffered. I then acted.
2015 marked my employment with the Crohn’s and Colitis Foundation of America. Although I am no longer an employee, I continue to be a passionate advocate for patient’s rights and am eager to continue increasing awareness of IBD in Black communities. If you have IBD and share my appearance, you are not alone.
Meaningful articles you might like: Infant Formula and Constipation – What You Need To Know, How To Calm Your Infant’s Upset Stomach – 17 Easy Steps, Inflammatory Bowel Disease